Category: daily update

Naturopath 2.0: goals and strategies

i got enough sleep before the meeting with the naturopath.

basically it was kind of like therapy.  except from a cancer survivor.  whose whole deal is finding ways to win the mental war and compensate for the nastiness of the physical war in the body.

he gave me B-12 vitamins.  b/c I don’t eat meat, which is mostly true.  (did you know that pescatarian was added to the dictionary today? So was Fanboy!!! — http://edition.cnn.com/2008/US/07/07/new.dictionary.words.ap/index.html)  and it will also help my liver function

and we talked a lot about goals and how i need to overcome this mentally.  it was a lot of information all at once. and it was just the same information as the last time, but more specific.  lets see if i can remember:

1. I personally have to take on the mental battle.  The drs are doing the chemical stuff, but I have to win the mental battle.

2. I need to set goals.  Part of the problem is that I am just reacting right now.  Reactionary.  I feel bad, I feel good.  I need to set short term and long term goals.  So I have something to aim for.  My long term goal is full quality of life during the 11 month treatment period.  My short term goal is to make it through the next week feeling good, with more energy, and more calmness.  And to have liver enzyme counts that allow me to finish up the drugs.

To accomplish the next week’s goal he told me I need to eat more (whatever I can eat, whenever I can eat), continue to exercise, take my B-12, and I forget the rest.  Oh, meditation.  Meditation.

I said to him that meditation seemed to work, but I didn’t understand why. And he said something that was kind of stunning, but I kind of forget what it was.  maybe it was kind of mystical like ‘maybe you know more than you realize.’

Anyway, it was really early in the morning, and it was so much information, but I forget.  The next meeting is after noon, so I’ll be in better shape.

The other thing he kept saying is that I have to move through this.  I can’t be passive.  I have to move through this, and arrive at a state where I am at peace with the cancer.  Because, as he says, I will never get to the point where the cancer is a non-issue.  He is 19 years out, and he still thinks about it.  As he says, this is now version 2.0 of my life.  And there is no going back.  But there is making peace.

And if there is no making peace, then I play victim.  And that is lame.  I don’t want to play victim.  Laaaame.

i think there was a bunch more, but that is what i remember now, two hours later.

now it is time to leave to get my Interferon.  week 3 begins.  hopefully this will go easy.  and my liver will stay happy.

So much cancer today, so upset

Dinner tonight was HW and her husband JW and P’s parents BD and SD.  HW has an abdominal cancer.  I’m not really sure exactly where it is located.  I think it is ‘worse’ than mine, not that speaking about betterness or worseness has that much value, as it is all statistics, and it is all so random.  anyway, I think I was told once, but I forget.  or maybe i forgot.  as a coping method.

HW was my first grade teacher.  She is BD’s best friend, though BD lives in Napa now and doesn’t get to see her much. HW asked me how my week had been, and i made a hand motion for a wave that started low, got high, and ended low.  She said “We must remember to cherish the good moments.” One can never be too old to learn from their first grade teacher.

HW found out about her cancer at around the same time I did.  Maybe right before.  Maybe right after.  I can’t remember. (Or again, maybe I forgot as a coping mechanism — my memory has been so unreliable through all this.)  She was my first grade teacher.  It feels so strange to talk about Infusion procedures, and trade cancer stories with your first grade teacher.  It is both a testament to how amazing she is, and also how young I am.  Its one of the few kinds of things that make me say “this is not fair” and feel like crying.

She seems heroic.  like, more heroic than me.  I’m not sure why.  Maybe because she is more likely to die.  Or I am less likely to die.  I’m not sure which of those sentences is the right phrasing. Or maybe because she has lost her hair.

Sometimes I wish my treatments would make my hair go away.  People are constantly saying “you look so good” and I wish they understood how much I cry.  and how fucked up my body is inside.  and how hard this drug regimen is.  I wish there was some external marker.  I have two really big scars.  but one is in my groin, so not so easy to flash people (i’m actually grinning a little bit right now.).  The other is on my calf.  When I am riding on my bicycle, I actually imagine what it would look like from behind.  I wear it as a badge of courage.  It is the one visible marker.

Even though everyone keeps telling me how heroic i am being, or how gracefully i am handling this, maybe HW seems more heroic than me because she is just the only other person I actually *know* who is currently dealing with this.  There are other people I know who have gone through this.  And there are the kind-of anonymous people at the Infusion center, but I only know the first name of one of them.  The other Interferon woman who is the only other everyday person doesn’t even wave at me when she leaves at the end of the day.  I tried waving at her, but it was awkward; she didn’t really wave back, but kind of smiled.  She is middle aged, which is still young for the center.  Mostly very old people.

between my colleage and having HW over, there was a lot of cancer talk today.  all day.  it was hard.  i knew it would be hard, and i went for a bike ride beforehand.  i rode hard, and was winded.  i had a lack-of-oxygen-from-exercising ear ache.  it felt good.  and also it was a distancing tool.  i think.  i realize this in retrospect.

I was kind of nervous all day.  about seeing everyone.  i mean, i don’t see many people these days.  i kind of freaked out at the farmers market this morning because there were so many people.  And at dinner, I kind of wanted to just withdraw from the whole thing and go upstairs and cry or write email, or curl up in a ball, or something. but BD sat next to me the whole time and held my hand

I’m nervous about tomorrow.  but i think i should be able to sleep okay. i will take the regular klonopiin and ambien.  and listen to this new CD:

last night i went to sleep listening to this ‘visualization’ CD for stress.  i was too scared to listen to the cancer one.  the narrator repeatedly states that the best time to listen to the CD is right as you are going to bed, and that if you fall asleep while listening, that is very much okay.  so of course, i fell asleep almost immediately when she finished the introduciton.  so i think i’ll listen to that again tonight, and hopefully the anxiety and stress will go away, and i will sleep well

mom just came into my room to tell me i have a 9am appointment with the Naturopath.  I was really peaceful, and then the idea that I was going to have to get up so early, and go to see this guy just to ‘check in’ made me really angry.  and really ready to cry.  I stormed downstairs, drank three glasses of water, almost ate something just to eat something (not hungry) and came back upstairs, and rewrote this entire post to reflect how upset i am feeling right now.  how anxious i am, and how upset seeing HW made me.  upset at my own fear.  upset by my own fear.  oh, god, what a state to be in before bed.

becoming a melanoma expert

one of my colleagues called me today.  i talked to him for a while.  just chatting about the situation.  but also, an acquaintance/friend of his was just diagnosed with Stage III Melanoma (what I have).  but there are complications — something in the intestines that is (maybe) not the melanoma, it is something else.  he’s having blood in in his stool; i think it sounded like he had noticed something a while ago, but hadn’t gone until the blood showed up.  apparently the doctor said something like ‘i wish you had come six months ago.’

hearing that story makes me so glad i reacted in the way i did.  i swear, i wonder how long it would have been until i found it, if i hadn’t forgotten to trim my toenails, and if it wasn’t so dry in my apt in the winter, i wouldn’t have scratched the back of my dry dry calfs, and i wouldn’t have caught my toe on the lesion and yelped, and looked down to discover that new mole.

actually, i know when i would have seen it.  K saw it and asked what it was.  I told her i had gone to the dermatologist, and he said it was either a blood blister and going to go away in four weeks, or to come back to have it removed.  so it would have been maybe six weeks later.

my primary care physician (whom i totally have a crush on) called me when she found out (via doctors reports.)  she was pretty amazed/shocked herself.  she said “you know, you saved your own life by finding it and acting on it.” and she is not the kind of person to make exaggerations.

anyway, it was great to talk to my colleague today.  i enjoyed talking with him.  but it was a little weird being the melanoma expert.  i mean that is largely why he called.  he wanted to give his acquaintance/friend some info from my experience, and to get my doctor’s info.  its not something i really *want* to be an expert on.

also, it was a bit of pretend-normal.  talking to him, i got up for it.  i felt better talking to him.  i was concentrating.  using all my energy to be lively.  trying to be upbeat.  charming.  make jokes.  laugh at his jokes.  etc.  in the process i make it seems like i am doing better than i am.  partly b/c for that moment i *am* doing better.  but also b/c i don’t want to appear not well.  it is, to a certain degree, about appearances.

pretend-normal.  tomorrow i restart the Interferon.  back to life in the slow lane.  no appetite, no energy, no motivation.  i have been really anxious.  i took extra anxiety medication this morning.  i don’t know if it helped.  i rode my bicycle hard.  i think that helped.  i was breathing really hard; the kind where you get a headache in your ears.  that is such a sign that you are working out hard.  i have not worked out that hard in four months?  it sure feels good.  though who knows when i’ll be able to do it again.

130 tomorrow is bloodwork.  hopefully i pass, and get the drugs.

anticipatory despondency (sp?)

ive been totally despondent all day.  i have no energy, and no appetite.  its like i’ve already restarted the Interferon.  Like this is some kind of psychosomatic preview.  I have shuffled around the house trying to figure out what i can bare eating.

i cried hard today.  for the first time in a long time.

i realized that i’ve been here in portland for a month.  time just slips by when you are sick.  such a strange thing.  i’ve never experienced this until the last 6 months.  Its been six months!  half a year already.  that is so amazing.  so awful (& awe-ful.)

writing it down helps get it out and away.

my parents dont know what to do w/ me.  they keep suggesting these things to do.  go to Multnomah Falls.  go for a bike ride.  go for a walk.  but i feel so awful.  i know that getting out and doing something will probably make me feel better.  but the thought of it also makes me totally revolted.  what a mess

its going to suck again, but i can’t wait for the Interferon on monday, so i can just get this over with

my mom brought me some chicken soup, which seems to be the only thing i can eat when i get like this.  mom’s homemade chicken soup.  so cliche.  but it works.  feeling a little bit better.

i can’t wait to be done with this and back in my normal life.

ADDENDUM

(photo CC-BY-SA from Flickr by 80sAustin)

I spent an hour+ meditating, which helped.  I don’t really understand why it works, but it does.  It calms me down.  Gives me a structure to feel my emotions, cry where needed, etc.

Then, as per O’s suggestion (re: my observation) I took the novelty approach, and walked somewhere I had never walked before.  Kind of.  I walked down the Marquam Trail towards downtown.  We used to walk down this trail when I was little, and I used to run it in high school, but I haven’t walked it in at least 10 years.  The trees were so huge…  It was amazing to be in the woods right in the middle of the city.  I grew up in it, but I clearly had forgotten.  It is nothing like Central or Prospect park, which are so manicured.  And also so full of people.  I didn’t see anyone the whole time.  Though I heard a little brook gurgle.  And lots of birds.

When i got to the bottom, I called my mother for a ride back up the hill.

Walking down was hard, physically.  Which was emotionally invigorating.  But also broke me down enough that I had to stop several times to cry.  I wonder if I am reverting to the state I was in when I first found out and all I did was cry.  I would sit down on the subway, and just start crying.  I hope not.  At least I can cound on the Interferon to blunt all emotion.   I know, I know, that is a totally fucked up concept.

A brief return to un-drugged-ness

my liver function was too high, so i am not getting drugs this week.  this was a kind of a let down.  (i am drinking a detox tea to help my liver get ready for its test on monday)

the unexpected silver lining is that i get to feel normal again for the week.

i have an appetite, some energy, and my sense of humor back.

up to this point, i have had absolutely zero appetite, been sleeping 14-16hrs a day, and yawning constantly.  and kind of emotionally ‘flat.’  not that much pizzaz, shall we say. (which is to say, dull and emotionless…)

i started to feel it on tuesday, but it took until wednesday for my appetite to really come back.  around dinnertime i told my mom that i wanted to go out for dinner.  like, i wanted to go out somewhere nice, joking that i only had another five days of enjoying food, before the drugs started again.  she laughed and asked where, and I mentioned this one restaurant Higgins that I had never been to.  turns out they had a gift certificate that had been sitting around for a year, and she made reservations.

i also went for a bike ride with my dad.  just three miles around the fairmount loop.

and i drove the car over to my friend KT’s studio.  first car driving this trip, which is the same as saying first car driving since last thanksgiving (9 months?).  At thanksgiving I scraped the front end of my dad’s car in a parking garage.

Liver Function Too High

over here, i had a small setback.  my liver function test was too high. Last week it was 160, this week it was 317, “normal” is 10-40, but on Interferon it is kosher to go up to 200.  so they gave me the IV for the fluid, but are holding me for a week for the Interferon.  i have to wait a week then if my liver function is back in the acceptable range i will continue.  i have been told this is is quite common.  so i’m not worried.  i was hoping that i would be done sooner than later, but that is hopefully all this means.

stopping in the middle or modifying in some way is more normal than not.  my understanding is that it does not compromise effectiveness.  and when i made my ticket, they made me budget in an extra week “in case.”

So now the weird thing is that I am maybe going to feel okay this week.  I say maybe, b/c who knows, as my weekends were worse than my weeks.  That said, I do feel better this evening than I have for a while.

Sadly, it will probably make going back next Monday even harder.

104, but thankfully that’s not my fever

it was so hot here in portland this weekend.  104 degrees yesterday.  something a little less today, but with nasty humidity.  If feels like a rainforest.

i keep having to lie down with an icepack on my chest.  a big icepack.  it takes the edge off for a bit, but then i’m hot and sweating again.   my mouth is all parched and cottonmouthey.  no matter how much water i drink.

and this is *with* air conditioning.  i can’t even imagine what this would be like in nyc with my wall AC.  wow.

Halfway there

I finished week two.  I always think of these kinds of things in terms of running a mile.  Four laps around the track.  I just finished the second lap.  Fractions help make things more understandable for me.

I managed to keep the IV for the whole week again.

But today, Saturday, I feel kinda terrible.  This happened last week too.  The weekend is supposed to be a slight reprieve, but I seem to feel worse.

Bob was in for IV fluids again.  He and the other woman who started at the same time as me were chatting.  Bob asked me how bad my chills had gotten.  When I told him I didn’t get any, just got really cold he was kinda shocked.  I asked him, and the other woman who started at the same time as me if they did; she said twice.  Bob nodded, as if to imply he got them at least twice.  These are the kind of chills where you couldn’t hold onto anything, where your body just shakes.  Boy am I glad I missed out on that.

What’s in a word OR Eating the Cancer

Yesterday I went to a Naturopathic Doctor who works at the Complementary Medicine center at the Cancer hospital I’m getting treatment at.  My mother pushed for it.  I didn’t really care, though felt like I should do my due dilligence.  My father was not consulted.

There are a few strong memories I have about my father when I was young, especially discussing medicine.

My favorite was when my father was drinking a coca-cola while driving, and in all earnestness I told him not to drink and drive.  I really thought that was what all those advertisements were telling me.  He thought that was a hoot.  I’m smiling writing this.

I also remember asking him what a “shrink” was, and he explained that a psychologist was someone who talked to people about their emotions, that a psychiatrist was someone who went to medical school and proscribed drugs for people, and a psychoanalyst was for people who believed in some out of fashion ideas that someone named Freud believed in.  He didn’t tell me what those ideas were, for fear I would kill him and run off w/ mom (LOL); I didn’t hear about them until we read Oedipus Tyrannos in 9th grade and our teacher had to explain to our dumbfounded class of 15 year olds that this Freud guy really did think everyone wanted to off their dad to get their mom.  And some other stuff…

Anyway, the real story here is when I asked him what a Naturopath was.  Or maybe I asked what a Chiropractor was.  Either way, the answer was pretty definitive: A Dentist is someone who did not get into Medical School, a Podiatrist is someone who did not get into Dental Schoool, a Chiropractor is someone who did not get into Podiatry school, and a Naturopath…  don’t get me started.  It was something like that.  So typical of an MD.  To be fair, I think my father has mellowed out a little bit about these issues over the past 20 years, but he is still an MD.

So we went to see the Naturopath yesterday morning.  His only availability was at 8:30.  One of the first things he said was “you look shell shocked.”  True, true.  He was kind of funny, and personable.  He asked me to give him the history of my cancer.  Then he told me about his experience with cancer: he was a 32 year old filmmaker and he was diagnosed with testicular cancer.  His experience beating cancer and dealing with the MD world inspired him to go back and become a Naturopathic Doctor to help people make it through cancer treatment.

He gave me a couple of supplements: some “pro-biotic” that replaces all the good stuff in my digestive tract that the drugs remove, so I can have “good poops” as he said. (grinning.)  And he gave me some flower essence drops that supposedly help reduce anxiety.

But what he really gave me were a couple of ideas.  Pointing at his head, he said “Its all up here.  Either you eat the Cancer or it eats you.”  He said several variations of that idea.

What really made it click was when he said “You know, if it makes it easier for you to think about it this way, Interferon isn’t really chemo; it is an immune system stimulant.  It works on completely different principles.”

So here we were again, back at the is it or isn’t it chemo.  But this time I found that thinking of it as NOT chemo made it something I could digest and move on.  I’ve been feeling better since then; emotionally and physically.  Maybe it is just that point in the treatment where I have built up enough tolerance for the drug that I can deal.  Maybe I am beginning to learn how to eat the cancer.